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Saturday, December 24, 2011

Good News and a Merry Christmas to All

I wish all readers a Merry Christmas. I hope Santa will be generous this year. Will be reading Twas the Night Before Christmas and the Polar Express tonight. I have great memories of reading these books to my son on Christmas Eve. The sentiments expressed in these two fine books makes me forget the commercialization of the holiday season.

Now for the good news. I received the below email from Simi Linton. If you are not familiar with her work I urge you to read her memoir and ground breaking Claiming Disability.

Justice has been served! Judge George Daniels has ruled that meaningful access to the NYC taxi system is required.

Plaintiffs Christopher Noel, Simi Linton, United Spinal, The Taxis for All Campaign, Disabled in Action brought a civil rights class action suit against The New York City Taxi and Limousine Commission, and Commissioner David Yassky. Disability Rights Advocates represented the plaintiffs.

Judge Daniels ruling calls for “meaningful access” to taxis for people who are disabled. Though he does not define precisely what that means, he writes:

“It is clear, however, that less than 2% of the city’s fleet being wheelchair accessible, resulting in the unavailability of taxi transportation and significantly increased waiting times for disabled persons who require wheelchairs, is not meaningful access. In fact, during oral argument, the TLC conceded that its regulations do not provide meaningful access to individual who require wheelchairs. It must do so.”

In a footnote, he also writes:

“…meaningful access for the disabled to public transportation services is not a utopian goal or political promise, it is a basic civil right. Title II requires immediate and full compliance.”

Isn’t this terrific! Of course, there will be more news stories on this – but for now it is important to spread the word, and rally people behind this decision. We have yet to see how "meaningful access" will be interpreted - and what the true impact will be. Whatever way it is implemented, the ruling itself will certainly have an impact on New York City, and hopefully will also have broad impact on future rulings across the U.S.

Monday, December 12, 2011

A Dangerous Love Affair with Autonomy: Symanski Life Lessons

In the last week Christina Symanski, a woman I have never met has not been far from my mind. Frankly, her death has me spooked. She lived well within driving distance of my home. She shared the same civil rights that I enjoy and yet she did not believe her life had any value. She was convinced her quality of life was abysmally low and that it was not going to ever improve. She thus chose to die. I understand what drove her to die as my struggle to live an independent life was very much in question last year. I was for many months utterly dependent upon my family and friends. This dependency left me despondent. A few things saved me from sinking into the depths of despair and depression like Symanski. Even in my darkest moments I knew powerful social factors were in play. I knew these social factors led many quadriplegics such as Symanski to believe their lives lacked meaning and value. They did not want to be a burden on family or friends. They mourned lost friendships and lovers. They had no job or prospects for employment. They feared life in a nursing home. They received substandard health care due to blatant discrimination. They were confronted with economic ruin. They were socially isolated unable to leave their homes. This is a grim reality that leads to an untold number of deaths.

When I cannot get a story like Symanski’s out of my mind I think of other people with a disability that endure. By endure I do not mean endure physical deficits but rather endure a society that would lead us to believe we are better off dead. Society embraces the dignity and autonomy of those people with a disability that want to die. These people have character! These people are brave! These people are applauded! This is an old story, a deeply ingrained stereotype that is not questioned. We truly admire people with a disability that want to die and shake our collective heads in confusion by those that want to live. This mentality plays itself out in popular culture. Hollywood produces films such as Million Dollar Baby that receive accolades. I was stunned not by the film but the audience reaction. When I saw it in the theaters the audience cheered when the main character Maggie was killed. A comparable film, the Sea Inside, was released in Spain. The courts are not free from anti disability bias. Jack Kevorkian eluded being convicted even though he killed people who were disabled and not terminally ill. In 1990 a Georgia court ruled that Larry MacAfee, a quadriplegic who was not terminally ill had the right to disconnect himself from his respirator and die. The court declared MacAfee’s desire to die outweighed the states interest in preservation of life and in preventing suicide thereby upholding his right to assistance in dying. Just the year before another man, David Rivlin, also sought court intervention in his wish to die. Unlike MacAfee who did indeed die, Rivlin changed his mind. In 2010 Dan Crews expressed his desire to die. He feared life in a nursing home and wanted to be disconnected from his resperator. I could site many other examples but the common theme remains the same—people with a disability that publicly express a desire to die rather than live become media darlings. They get complete and total support in their quest.

The stories above infuriate me. Why is it we rally around those people with a disability that want to die and yet refuse to provide the necessary social supports that would empower people with a disability to live rich, full and productive lives. This makes no sense to me. It is also downright dangerous in a medical system that is privatized and supposedly patient centered, buzz words I often heard last year. It makes me wonder though does “patient centered” allow, justify and encourage people, paralyzed people, to die? It is a euphemism that makes people in the health care system feel better? Symanski died because she found living with a disability intolerable. The unspoken corollary is she was driven to die because social supports were woefully inadequate and medical care substandard.

I remain stunned and saddened but hardly surprised by Symanski’s death. The social vortex Symanski was sucked into that led to her death has claimed the lives of many people with disabilities. Paul Longmore, a brilliant scholar and disability rights activist, wrote about what saved his life: “One thing saved me from that fate: the disability-rights movement. Our movement won my right to live independently, to work productively, to gain access to public places, to receive reasonable accommodations, and to obtain protection from discrimination. Our movement gave me the gift of a nurturing community. It offered me a positive, disability-affirming identity. It taught me pride.” How I wish Symanski could have met Paul Lngmore and others involved in the disability rights movement.

Life Paralyzed: A Final Post

On Sunday December 11 a final post was put up on Life: Paralyzed by Christina Symanski. Entitled "Message to My Friends", Symanski gives those that knew her a final good bye. I urge everyone to read it. One passage struck me as particularly sad.

"Please know that my decision to leave this life behind was not made rashly, or without careful consideration and concern for the people I'm leaving behind. I have been fighting an uphill battle to live, every day since my accident. A big part of me died back on June 5, 2005 and my life was never the same. Everything has felt empty, and bittersweet. Every memory tainted with sadness, over everything that I've lost, everything I miss doing, and everything I had planned to do, and hoped to be.
My paralysis robbed me of the most basic human necessities (freedom, privacy, independence, and physical intimacy)."

I wish Symanski had learned to cope with paralysis. I do not necessarily mean cope with the very real physical struggles she faced but rather make a theoretical leap in logic. Comparing life with and without paralysis is inherently negative and misleading. There is life with paralysis and there is life without paralysis. You cannot compare the two--they are fundamentally different social experiences. Paralysis I would maintain robs a person of only one thing--equality. The civil rights of people with a disability are not valued and often violated. In fact, disability rights and civil rights are not considered by many to be comparable. I wish Symanski embraced her inalienable rights, rights that many people take for granted. Her death is a tragedy for her family and friends and an indictment on American society's failure to provide sub basic social supports for people with a disability.

I Hate the New York Times

I was having a good day until i read the New York Times. Yet again the NYT has published a story, in this case a review of a TV show, that left me deeply annoyed. Here I refer to a December 11 review, " Disabled Host, With the Emphasis on Able" by Jon Caramanica. A few will know Zach Anner, a man with cerebral palsy, who won a reality competition (Your Own Show: Oprah's Search for the Next TV Star) to host a program on the Oprah Winfrey Network. His show, Rollin with Zach, will air tonight. I doubt I will watch the show. But it is the review rather than his show that has me deeply annoyed. The NYT characterized Anner as "witty and charming and mildly zany. And also disabled". Why is that phrase, "and also disabled", included? In my opinion it is based on the assumption that people with a disability cannot be witty, charming and zany. Surely we people with a disability are miserable and morose. Another unfortunate passage sates that: "The inspiration in Mr. Anner’s story is implicit. Unlike most travel shows, on which the hosts feign omnipotence and fearlessness, “Rollin’ With Zach” often reveals Mr. Anner adjusting for his disability. Concern for his well-being is embedded into the show, as is the sense that things will not always go smoothly."

When I read these lines I wanted to scream. Why don't things go smoothly when Anner travels? The answer is simple: in spite of the law mass transportation remains either inaccessible or problematic for people with a disability. The reason for this is not because Anner cannot adjust for his disability but rather society fails to be inclusive to people with a disability. Problems abound because people with a disability are not valued. Equal access does not exist within the travel industry. Perhaps this is the reason Anner is not "fearless". Like many people with a disability he knows all too well that when traveling barriers to inclusion are common place. As for "concern embedded" into the show, I find this demeaning. Why should this concern exist? We people with a disability are perceived to be incompetent. Thus the all powerful bipedal people will out of the goodness of their heart protect the well being of people with a disability. This logic is not just wrong but provided the theoretical justification for excluding people with a disability for decades. Paralyzed people cannot fly in a plane, they are a safety hazard. People with a disability cannot attend public school, they are a fire hazard. Exclusion was not seen as a form of discrimination but rather done for the "well being" of people with a disability. Such a sentiment still exists today in spite of the fact the ADA was passed 20 years ago.

One last example should suffice: "Both initial episodes conclude with Mr. Anner attempting a water activity, surfing and then water-skiing, which he succeeds at, with some hitches. On a chair-swing ride at Navy Pier in Chicago the look of ecstasy on his face at the freedom of movement is genuine." A few things are assumed. Water sports and sports in general are beyond the ability of most people with a disability. Sports are for fit people, those without a disability. Implied is the refusal to perceive adaptive sports, in this case a water activity, as equally enjoyable. Why is "ecstasy" on Anner's face? Simple, disability is inherently bad and restricting. Disability is always compared to normal, meaning bipedal movement. Surely Anner must wish he was normal, not disabled. This is evident by the "freedom of movement". Of course the reverse is a lack of freedom and movement people with a disability experience. Easily ignored is that it is not the lack of movement that prevents freedom but socially constructed barriers. For instance I can ski but I cannot ski at all resorts because basic wheelchair access is absent.

The review incorrectly concludes that Anner is a "role model". Who exactly is he a role model for? People with a disability. I can assure you Anner is not my idea of a role model. My role models were people like Ed Roberts and Paul Longmore. These men questioned authority, bucked the system and won. They did not win for themselves but for all people with a disability. Roberts and Longmore made this country a better place for people with a disability. This I admire far more than any television program, especially one on the Oprah Winfrey Network known for fluffy self help pablum.

Friday, December 9, 2011

Mourning for Christina Symanski: Better Off Dead?

Last week I came across a blog entitled “Life; Paralyzed” written by Christina Symanski. The blog was devoted to her “thoughts & day to day struggles living with paralysis” and “current information related to spinal cord injury”. Symanski started her blog in September 2009 and her last entry was posted on September 13, 2011. Since I discovered her blog I have read each and every entry several times. I found much of what she wrote eloquent even though I considered her views on spinal cord injury morbidly depressing. I was hooked by her passion and the raw way she expressed her emotional and physical struggles. In fact, I stayed up most of the night reading her blog from beginning to end. In the morning I googled her name and found more of her writing, paintings, videos posted on various sites, and to my great shock I learned she died two days before I discovered her writing. I was dumbfounded by her death. I still am shocked. I mourn for a woman I never met. My heart goes out to her family.

Not once in the last week has Symanski been far from my mind. Every morning I google her name in the hope of finding an obituary. Every morning I am disappointed. No mention of her death has appeared. I do not know why Symanski’s works have touched me so deeply. Perhaps her words struck a chord because they are so radically different from mine. Perhaps it is because she wrote so well. Maybe it is more basic; I am appalled by her death and morbid views of paralysis. Even more disturbing to me, she did not die of natural causes. She wrote extensively and with sincerity about her desire to die, to end her suffering. She accomplished this goal and in the manner she wrote about. Based on threads at the Care Cure Community, she refused all food and hydration. According to a woman that identified herself as Christina’ s best friend “Christina passed away yesterday, December 1st, exactly two months from when she started refusing food, water, and medical treatment. She spent most of those months at home, aside from a week in a hospice facility to get her palliative meds sorted out. Everything didn't play out quite as peacefully as she imagined it would, and she was conscious up until a few days ago, but her final moments were calm and comfortable and she passed on in her own home with her family at her side.”

It is one thing to express a desire to die, to essentially starve and dehydrate one’s self, and another to follow through. Symanski’s writings illustrate her interest in a cure for spinal cord injury, struggle coping with a high-level spinal cord injury that caused a host of medical complications, foremost among them autonomic dysreflexia, and her increasing despair. In 2009 her entries largely concerned a cure for paralysis. Symanski was injured in 2005, spent a long time in critical care hospitals and was for more than a year the resident of a nursing home. She escaped the nursing home, an almost impossible feat, lived in her own apartment and was remarkably productive. She was interviewed for newspaper articles and talked at length about her artwork. She posted three well produced but maudlin videos on line about life with a high-level spinal cord injury. A cursory reading of Symanski’s posts indicate that as 2010 progressed her entries became increasingly dark. Her autonomic dysreflexia continued unabated and the solutions suggested were unacceptable.

Three posts this year were particularly dark. Here I refer to “Meeting with Fr. Doug”, May 9, 2011; “How to Die in Oregon”, May 31; “Why I think I should be Allowed to Die with Dignity” May 31, 2011. All three posts indicate she was actively seeking a physician that would declare her terminally ill and I hence be eligible for hospice care. She consulted a lawyer to discuss the legal ramifications of her desire to die. She also contacted a local palliative care consultant to discuss all her options. Just as she was driven to search a cure for spinal cord injury she was equally driven to die. This is deeply disturbing to me at multiple levels foremost among them is that she convinced a doctor, lawyer, psychiatrist, palliative care specialist and her family to acquiesce to her wishes. This is well outside of the norm and I wonder about the ethics and legality of her actions. It also reveals an unspoken truth. When a person with a disability expresses a desire to die and engages in an all out effort to die they are applauded and encouraged by others—others without a disability. Symanski’s blog is littered with encouragement and supportive words. Her express desire to die in face of a debilitating condition reminded me of a lauded opinion piece I read in the New York Times this summer. “The Good Short Life” by Dudley Clendinen was an eloquent expression of his desire to die before ALS robbed him of his dignity. Society loves people like Symanski and Clendinen who are stately, dignified and eloquent. Their desire to die is perceived to be noble. Here is the problem. No one asks why, why do they want to die? Symanski feared being forced back into a nursing home. Clendinen questioned why he should spend $14,000 a year on a medication that will extend his life a few months.

In choosing to die people like Symanski and Clendinen reinforce an ugly truth about how people perceive disability--that is one is better off dead than disabled. Of course few people will openly admit this. Jackie Leach Scully identifies this as nonverbalized bias “disablism”. She wrote “ People who are nonconsciously or unconsciously disablist do not recognize themselves as in any way discriminatory; their disablism is often unintentional, and persists through unexamined, lingering cultural stereotypes about disabled lives”. This made me wonder what would have happened to Symanski if she were not paralyzed and instead had a more socially acceptable chronic disease. Would she have been allowed to dehydrate and starve herself to death? Not a chance. It is only because she had a severe disability that her desire to die was understandable, acceptable to others.

Wednesday, December 7, 2011

No Faith in My Fellow Human Beings

Last week I had a highly rewarding exchange of emails with a woman who is detailing her end of life experience at She is experiencing congestive heart failure and wants to die with dignity and in peace. We started our exchange as I left a cranky comment about her positive response to the Dr Oz I railed against on assisted suicide. Despite our different views we showed each other a great deal of respect that is all too often lacking when end of life issues are discussed. She is facing some very difficult decisions in the very near future. I wish her and her family well. I also urge you to read her work. It is important in large part because she is a living example that modern medical care and medical technology have created impossible ethical conundrums. I do not envy the decisions she and her family will be making. Thankfully it seems she has an excellent rapport with her physician and support of a loving family. As a veteran I am pleased to know she has received appropriate supports in terms of health insurance.

There is no proverbial but coming in this post. Rather an observation: many people who are nearing the end of their life know little or nothing about disability. Disability simply has never touched their lives or members of their family. Disability is an abstract concept and disability rights a foreign idea. But the woman I exchanged email with does have some experience. In her response to me she concluded by noting in "Dr. Oz, Montel Williams and the Bad Cripple" "my mother had polio as a child and is truly crippled by it. she has 3 daughters and growing up with her it never occurred to me that she would be better off if she took her own life. that is one reason I don’t worry about the slippery slope. we are smart enough to make the distinction between someone with a debilitating terminal illness and someone who is disabled. maybe i just have more faith in my fellow human beings."

In these few words a great divide is revealed. Those that favor the right to die with dignity are capable of seeing that those with a disability are not the same as those with a terminal condition. As this woman notes she has faith in her fellow human beings and based upon this faith is not afraid of the slippery slope. I love this sentiment. I do not share her faith or optimism in others. I do not trust the medical establishment. By medical establishment I refer to the medical industrial complex that dictates care in this country. I am even less inclined to trust my fellow man, the ordinary person, like the people on the Dr. Oz show that appeared to be happy to let anyone suffering to end their life with the full support of the medical establishment. In the case of the Dr. Oz Show anyone with a disability was clearly suffering, had little dignity, and deserved to die. The emotions of the show not the few facts put in evidence scared me. It scared me because as much as doctors would like to contend medical care is a hard science there is as much art as there is science in medical care. Culture I assure you rears its ugly head in every aspect of medical care and medical technology. By extension, culture is a significant variable in the way we die. We do not discuss end of life care--we never have and at this point given the very real ethical issues we now encounter at the end of life we as Americans desperately need to discuss the matter. We need a national debate. It is for this reason I found my exchange of emails so satisfying. Our respective views were questioned and subsequently more clearly articulated. We both learned much from a person we had a serious disagreement with.

In thinking about my email exchange and in particular the passage I quoted, I was reminded of one of my favorite books in disability studies, Make Them Go Away by Mary Johnson. In her book Johnson seeks to answer a seemingly simple question: Why is there so little support for disability rights? Well, most people do not equate equal rights with disability rights and few liberal rights organizations support the disability rights movement. The net result is many people do not think people with a disability are a minority group subject to discrimination. I find this line of thought baffling. Prejudice is rampant and it takes much more than 40 years of law making to change our deeply ingrained beliefs. When I bring up the issue of disability rights and closely tie it it other civil rights movements the most common reaction is disbelief. More than a few people have rolled their eyes and some simply say I am full of bull shit. In response I will acknowledge no one wakes up in the morning and thinks I will discriminate against a person with a disability today. But that does not mean prejudice does not exist. And this is why I do not trust my fellow human beings. The prejudice I encounter as a person with a disability is deeply ingrained. It is ever present in the form of a lack of social supports, inaccessible housing and mass transportation, employment, poverty and the list goes on and on. Think of one word--disenfranchised. When all these socially constructed barriers are eliminated I will have faith in my fellow humans. For now, I am not swayed nor do I feel equal. This jaundiced view is not nearly as nice as the sentiments my email friend expressed but reflect the gritty reality I have experienced as a person with a disability.

Thursday, December 1, 2011

Waking Man Circa 2012: Exoskeletons By Extension

I find technology magazines and technology geeks to be devoid of any social awareness. I thus avoid such publications with one exception--i like to read about how technology people envision the future. Such predictions are almost always wrong--spectacularly wrong. Think the Jetsons wrong. My son sent me a link to a typical envisioning the future article. I was not enthused but he always has a good reason for sending an article to me. I am interested in not only the content of any link he sends but wonder what inspired him to send it in the first place. As a parent I am interested in knowing how his mind is working as a college student. As lunch time approached today I printed out the link, "23 Incredible New Technologies You'll See by 2021". Imagine my chagrin to read that paralyzed people will be walking by 2012--well sort of walking. This claim is grossly wrong but that is not the point. I now get why there is no chance my favorite invention to make fun of, the exoskeleton, will not go away.

Under the heading The Paralyzed Will Walk there is the proverbial but. The paralyzed will be walking but "not in the way that you'd imagine. Using a machine-brain interface, researchers are making it possible for otherwise paralyzed humans to control neuroprostheses--essentially mechanical limbs that that responds to human thought--allowing them to walk and regain bodily control". A photograph is even included of a man, muscular arms crossed with a skull cap on and hundreds of wires running down his back. Looks to me like dread locks gone wrong! It also sounds a lot like a high end exoskeleton. Deep pockets have been invested in the exoskeleton. What I call the cure industry has embraced this costly idea that has dubious value at best. It made me think how lucky I was to be paralyzed 33 years ago. Modern rehabilitation was being formulated in the 1970s and 1980s and patient care came first. Today things are radically different. Present day rehabilitation is both terrible and wonderful. The truly terrible part is the cure industry that sells false hope and preys upon the newly paralyzed who are fixated on walking. Don't get me wrong, cure for paralysis is a worthy goal as we humans were designed to be bipedal. However a modest bit of research shows we are a very long way from anything that resembles a cure for paralysis. For a practical person such as myself, that means moving on with life using a wonderful alternate means of locomotion--the wheelchair. A spectacular invention that empowers millions of people. In part this is why I hate the idea of the exoskeleton: it glorifies walking as the one and only means of locomotion. This sends a bad message to paralyzed people. Essentially walking is good, wheelchairs are bad. Let's look at it this way and see the folly. Imagine are a paraplegic such as myself. I have the following choice. To start my day I can transfer from bed to wheelchair and go. Time involved less than 30 seconds. Alternatively I can put on a skull cap with dozens of wires and then strap over half my body into "neuroprotheses". Call me crazy but this does not sound like it is an efficient use of time or movement. And here is where culture rears its head. We Americans value technology--the more complex and involved the better. Thus we will dump hundreds of millions of dollars into the exoskeleton but categorically refuse to provide the most basic support services for people with a disability to lead an ordinary life. This makes no sense and many paralyzed people suffer as a result. Needless social isolation and rampant unemployment is the norm. How I wonder can this be tolerated?

I would like to identify something positive about the development of the exoskeleton but have utterly failed. However, there is no doubt in my mind researchers will continue to spend vast amounts of money into the development of the exoskeleton. The reason for this was made clear in the article. Apparently "the same systems are also being developed for the military, which one can only assume means this project won't flounder due to a lack of funding". Great, just great. The real market for the exoskeleton is not paralyzed people but rather its military development. I guess we need the exoskeleton so military men and women can carry hundreds of pounds of gear. Given how insidious the military industrial complex has been weaved into the fabric of American society since World War II the exoskeleton will continue to be well funded. A cash cow even. At the same time states nation wide will cut services for people with a disability with popular legislative support. What a world.

Monday, November 28, 2011

Assisted Suicide: Never Enough

I do not trust groups such as Compassion and Choices who vigorously lobby for assisted suicide legislation. There is no question Compassion and Choices has deep pockets, is media savvy, and an effective lobby. The message is simple--they do not want people to die in pain and great suffering. It is hard to argue this point. Too many Americans die badly. However, I contend we do not need assisted suicide legislation but rather a vibrant hospice movement. While we have many fine hospices, Americans believe hospice care is tantamount to giving up. The result is people die badly and enter hospice care far too late. This only fuels the simplistic message Compassion and Choices advocates--even with hospice care we die badly. We must do better! In my estimation this line of thought is not only misleading but dangerous. Why do I feel this way?

First, all those that advocate for assisted suicide legislation are asking the wrong question. At issue is not how we die but rather how we live. I would posit we should seek to empower those who are at risk populations--the elderly, disabled, and terminally ill. How can we insure families with an elderly parent that has dementia receive adequate support? How can we insure families do not incur great debt caring for a loved one that is terminally ill? What can we learn from people that are near the end of their life? I may appear naive in posing these questions but I am not. I went through the medical mill as a child and recently as an adult. There is no doubt in my mind that to date we Americans have consistently refused to engage in a serious discussion about end of life issues. This refusal has hurt far too many people and spawned zealots such as the deceased Jack Kevorkian, a deeply polarizing figure. Nuanced debate is totally absent. We have two sides, those for and those against assisted suicide. If I have learned anything in life, it is that we do not often get to choose the way we die. When we let others make this decision for us we have entered into dangerous territory. Any discussion of quality of life is subjective in the extreme. Long ago when I was paralyzed my level of injury was considered very high (T-3). Paraplegics such as myself abounded but I met virtually no quadriplegics. One night I asked why there were so few quadriplegics. I was told think about it. I did and remained puzzled. High level injuries, above C-8, were not often treated. The reasoning was simple--life as a quadriplegic was not worth living. Fast forward to the present--all high level spinal cord injuries are treated. The decision making has far less to do with medical facts but American cultural perceptions. This was true in 1978 and it remains true in 20011. The presence of a disability is stigmatizing. For some it is a fate worse than death.

Second, assisted suicide advocates are never satisfied. They use the terminally ill to demonstrate their compassion but are perpetually pushing for wider use. Writing about assisted suicide in the state of Washington in the Olympian on November 16, Brian Faller argued it was time to think about expanding the legislation. He wrote "to improve the chances of passage, the Death with Dignity Act was written to apply only to the choices of the terminally ill who are competent at the time of their death.
This raises the question whether, if the act continues to work as intended, we should extend the choice of voluntary euthanasia to:
• Persons who are not terminally ill but suffering a severely debilitating medical condition they judge to be unbearable.
• Persons who are not competent at the time of their death but who previously made a competent choice of euthanasia as evidenced through a special type of advance directive." If we expand legislation as suggested by Faller I would be eligible to take advantage of assisted suicide. This scare me to the very core. It truly inspires fear. Even this is not as disturbing as what is going on in the Netherlands where assisted suicide has been legal for a decade. Euthanasia advocates are lobbying for mobile euthanasia teams who will "teat" the elderly and disable in their own homes. The Dutch Medical Association has approved euthanasia for people with dementia. This is particularly worrisome because in the near future it will be possible to test people for Alzheimer's disease before symptoms develop. That is people who are clear and lucid will be told they are going to develop dementia. What is the point of such a test when no cure exists? Researchers and clinicians say such testing will help families prepare for the future. Will that future include assisted suicide? Undoubtedly.

Further examples abound but suffice it to say once legalized assisted suicide will be used in greater and greater numbers. This is the case in Washington and Oregon as well as the Netherlands. So don't be fooled by the seductive and sentimental tactics espoused by advocates for assisted suicide. I saw this first hand at the Dr. Oz Show. It was shockingly effective, chilling really how he whipped the audience up into a frenzy of approval. I implore readers to think rationally about assisted suicide. It is in your best interests as well as mine.

Wednesday, November 23, 2011

Feeling Smart and Powerful

My power went out early this morning. My heart sank for a second and then I felt smart. I called my brother and within 40 minutes he had my fancy generator going. The clinitron bed sprang back to life. A couple of lights are on, phone is charged and I am back in business. No worries here. What a relief. In fact I am glad the power is out. I wondered if the costly generator would be akin to carrying an umbrella all day, a sure thing it will not rain. So my power is out but I am far from powerless. Better yet, my son is coming home this afternoon for Thanksgiving. It will be wonderful to see him. My fridge is stocked up with his favorite foods. Life is so funny. When I was his age I thought my folks were so strange the way they took delight in feeding me. Now I feel the same way and have no doubt my son thinks I am odd. Ah, the cycles of life.

Monday, November 21, 2011

Lives Worth Living

In one word, wow! I finally got to see Lives Worth Living the documentary about disability rights broadcast on PBS. This is an outstanding film for those intimately familiar with disability rights and those that have never been exposed to this largely disregarded part of American history. All the key figures I hoped to see were included in the film--my personal hero Ed Roberts, Judy Heumann, Fred Fay, Bob Kafka, Tom Harken and many others. I am not the least bit ashamed to say I got teary eyed a number of times. This was my history, our history on film. I carefully observed not only the important protests from the 1970s but the evolution of wheelchair technology. Yes, I saw the old clunkers Everest and Jennings manufactured for decades and compared them with modern day wheelchairs. Amazing how once the corporate monopoly Everest and Jennings exploited ended around 1980 wheelchair technology advanced by leaps and bounds. This is why I liked the film so much--it can be viewed by a person such as myself who has studied disability history and find it greatly rewarding. Yet at the same time a person with no knowledge can be introduced to the subject and come away with a basic foundation in disability rights.

All the reviews I have read are uniformly positive. Only one long review has been published to date. I am sure more are in the works. The sole long review I read, "The Promised Land Will Be Wheelchair Accessible", by Jeff Shannon was excellent. Shannon, a quad since 1978, the same year I was paralyzed, weaves in a larger discussion of disability rights into the review. I met Shannon this summer and we had a long lunch on the Seattle Waterfront. We have had similar careers, me in anthropology, Shannon in film reviewing. We have our differences but there is mutual agreement on the importance of disability rights. Given this, I was not surprised that both of us got choked up when I KIng Jordan spoke about the afternoon the ADA was signed. Jordan described the definition of the American Sign Language symbol used to express a long awaited achievement, the word "Pah". I did not know this word but as Jordan describes it and signs "Pah" I was overcome with emotion. I really am equal to others. What a feeling. I just wish the reality matched the feeling.

I do have one significant problem with the film. While righteous indignation is palatable throughout the film, I worry the uplifting end could be misleading. The culmination of the film is clearly the passage of the ADA. There is a sense among those with unfamiliar with disability that the ADA solved all our problems. Yes, Judy Heumann notes that oppression and problems still exist but that is not what many will remember. I can readily envision this film being widely show in high-schools where students will think well we solved that problem--discrimination--with the ADA. Meanwhile in the same building is a student with a disability that is segregated to a resource room and transported to school on a short so called special bus. This is discrimination and segregation in a socially sanitized and accepted form no different than what tok place before the ADA was signed into law.

Wednesday, November 16, 2011

Republicans Emotional Use of Disability

In the last presidential election when Sarah Palin used her son Trig to establish herself as an expert on disability rights I was appalled. Over the last two months a few people have sent me emails about Rick Santorum, a deeply religious right wing Republican. Why, people have asked, am I not blasting him? He is after all following Palin's disability handbook. That is Santorum is using his daughter who has Trisomy 18 as a emotional prop to appeal to right to lifers, those opposed to health care reform, and so called traditional values Republicans love to talk about. I simply do not take Santorum seriously but when someone sent me the link to the ad on You Tube above I had to write something. Watch this long political ad without either getting angry or sick and you have a stronger stomach than I do.

Based on the reviews posted on You Tube this ad is exceptionally successful. People love it! Sadly this does not surprise me one bit. Emotional arguments devoid of any factual basis about disability always touch the hearts of people who know nothing about disability. And the skeptic in me would estimate that means 90% of the country will fall for the rhetoric in the political ad. This makes me crazy as a quick google search, "disability rights" will reveal a wealth of information. This information will undermine the emotional response the Santorum ad was designed to prompt. Facts people. Facts and politics. Here is a fact Santorum does not want you to think about nor do any other republicans--disability is a valid political issue. Disability has a central place when it comes to health reform, aging baby boomers, and laws such as the ADA that was gutted by conservative justices put in place by former President Bush.

Forget the sentiment, ignore the tear jerking. Lines such as "Some people describe people like Bella as ‘disabled children, I look at her and I look at the joy, the simplicity, the love she emits, and it’s clear to that we are the disabled ones, not her.” People with a disability do not need pretty words and sentiment. People with a disability need equal rights. People with a disability need equal access to education. We need politicians to support IDEA so children like Santorum's daughter will get a good education. But Santorum plans on cutting spending on education. Do I really need to tell readers exactly who will be hurt the most? Santorum is also against the Affordable Care Act. He even goes as far as to suggest people with a disability will suffer and die if it is enacted. He conveniently leaves out the fact the vast majority of disability rights groups support the ACA. The fact is health care reform will help people with disabilities. Perhaps as a Senator he is unaware that access to insurance for people with a disability is difficult at best and financial ruin common. And lest readers think I am simply spewing out anti Republican rhetoric, I am not. I have no problem with conservative politicians. I do however have a huge issue with the way conservative Republicans skew facts and question their ethics since 9/11. We thus have people like Michelle Bachman who thinks water boarding led to the discovery of real facts. So what if it did? The American government is not supposed to sanction much less torture any human being. We are not supposed to detain people without cause or legal representation but we do. We are supposed to be allowed to dissent and have freedom of speech. But when that dissent becomes inconvenient we send in the police. Here I am referring to Mayor Bloomberg who sanctioned the police raid on Occupy Wall Street. That raid took place at 1AM, the media was barred from the area, the park was declared a no fly zone and no one really knows what the police did evicting protesters. Does this sound like democracy? Not to me as I find dissent our patriotic duty.

Let me reiterate. The above is not a rant specifically against the Republican Party or Santorum. He is just the latest conservative politician to use his child with a disability as a political prop. Some of these thoughts were prompted by Steven Kuusisto with whom I will end this post. He wrote: "The more I think about the GOP the more I wonder if ever again the best in our nature will clarify for truly decent conservative people. I happen to know many such folks. That well meaning principles have been sacrificed at the alter of theocratic extremism is terrible news for our republic. This is still a nation of good people. We deserve a good Republican party. Plenty will say I'm sniffing airplane glue." I don't think Kuusisto is sniffing glue. I am surrounded by such conservatives where I live in the wealthy suburbs of New York City. Good people largely even if I do not like their politics.

Monday, November 14, 2011

Four Walls Creeping In

It has been two weeks since I found the blister on my hip caused in large part to the Halloween storm and no electricity for almost a week. I was at wound care today. The wound is better, not much but better. I am still stuck in bed and will be for a while. This is very hard. I am overwhelmingly sad. I am coming to terms with the fact I will most likely not be healed until Christmas. Even then my skin will not be up to withstand the rigors of skiing. I had dreamed of skiing out West this winter. Looks like that is a pipe dream now. And in my grim mood I wonder if I will ever ski again. I wonder if I will ever resume a normal life. It is hard to make plans knowing one small mistake can leave me bed bound for months. At least I can function. I am not in a nursing home. I do not need my family to stay in my house and care for me. But life seems very restricted. Yes, the four walls of my bedroom are closing in and I am not happy.

Tuesday, November 8, 2011

Halloween Storm: Great Havoc

This is the pretty view of my property after the Halloween Storm. Never in my life have I seen over a foot of snow fall in October. My pumpkin never got carved, something I love to do, and I feel bad for the local kids. No trick or treating took place. The not so pretty pictures involve downed power lines on my road, destroyed trees on my property, limbs and branches everywhere. The road I live on looks like a bomb hit it for days. Clean up is going to take a while, months Frankly I did not believe the forecast and was not prepared. We never get significant accumulations of snow in October. Well, this was a historic first. A record setting storm far worse than what Hurricane Irene wrought. I was without power for almost six days. I held fast for over two days until real disaster struck. One cold powerless night I went to sleep in my son's bed and buried myself under a pile of blankets to stay warm. I even wore a wool hat to bed. When I woke up I had a bad blister on my original wound. I abandoned my home, got a guest room where my mother lives, and went to wound care. I have a blister. For anyone else this is no big deal. For me this means weeks in bed again.

Some good has come out of this. Thanks to my brother I now have a working generator. It will power my bed for about 12 hours before it needs to be refueled. I learned never ever to use heavy blankets for warmth. I got to spend a few days with my mother. She is a cool old lady as my son would say. Thanks to her generosity my skin did not evolve into a huge problem. When power came back on I had the bed company service it and move it into my bedroom. Yes, I am out of my living room. I am now like many other Americans who actually sleep in their bedrooms. This enabled me to clean my living room and move all the furniture around. My living room has never looked so good or clean.

I lost an entire week due to the storm. Nothing got done as my access is the internet was limited to my phone. I missed out on a few important issues I wanted to write about--an anti accessible taxi editorial in the NY Daily News, more on the Dr. OZ show, I missed attending an anti Euthanasia conference, and more. So yes, here I am stuck in bed but my spirits are not down. After months in bed a few weeks to endure will be a piece of cake. I am not worried about ski season or teaching next semester. The only being that is having trouble adjusting is my black lab Kate. She loved being where my mother lives. She was a star, all the old folks petted her and shared lab stories. She was thrilled by the attention. And now she is confused. She slept in the living room for a year and is now back to her crate in my bedroom. She is unsure where to sleep. But we are simply happy to be home and have power. Life is pretty basic.

Wednesday, November 2, 2011


I lost power Saturday afternoon. After three days I gave up keeping my place warm. Too much work. The fish in my aquarium all dead. My complaint list is long and I am not a happy camper. Worse yet my skin broke down. Saw MD, not a real problem but it could become one in a heartbeat. Very worried and in desperate need of power that makes my life go. The storm on Saturday that brought over a foot of snow at my house caused far more damage than hurricane Irene. At best, I hope to get power back Friday. Next week is more likely. I will post some pictures when power comes back. My property was hit pretty hard, likely lost my beloved American chest nut trees. Never thought I would say this after last year but I miss my clinitron bed and living room.

Wednesday, October 26, 2011

Lives Worth Living

Thursday night, Lives Worth Living, a documentary film about the history of the disability rights movement will be broadcast by PBS. The advance reviews have been outstanding. The film maker, Eric Neudel, has received many awards. Beth Haller, author of Representing Disability and an expert on the mass media, was "completely wowed by this powerful documentary that packs 50 years of disability rights history into 54 minutes." I will not be able to see the film Thursday but I am sure PBS will rebroadcast it. I urge all those with even a passing interest in disability rights and history to watch the film. I for one am deeply moved when I see disability activists from the 1960s and 1970s. For me it is like looking back in time. I get to see the old hair styles, clothes and terrible wheelchairs produced by Everest and Jennings. If this sort of imagery is interesting check out the Disability Rights Education Defense Fund You Tube videos on line.

Tuesday, October 25, 2011

More on Dr. Oz and Assisted Suicide

Stephen Drake at Not Dead Yet has put up another post about the Dr. Oz show. He refers to me and provides a link to my post about the Dr. Oz show. For this I am very grateful. It is very important that people read what Stephen has to say. He has been on the front lines so to speak for quite some time and Not Dead Yet is needed now more than ever. The Dr. Oz show highlighted this in spectacular fashion. Drake and Diane Coleman are forward thinkers whose voice needs to be heard. For instance, Drake anticipated the Dr. Oz show was going to be hopelessly biased in favor of assisted suicide. This has not been a good week or two for disability rights. We have the Dr. Oz show pushing assisted suicide and Mayor Bloomberg spouting off about the "dangers" of having accessible NYC taxis.

In an effort to reaffirm the rights of people with a disability and for the skeptics out there who may think I was exaggerating what I wrote about the Dr. Oz show, below is part of what Drake posted at Not Dead Yet. I had not met Danny Robert and Nadina LaSpina before last week and was duly impressed. I think their take reinforces what I wrote and exactly why Not Dead Yet is needed. I urge all to read the final paragraph very closely.

Bushwhacked in the Land of Oz

Danny Robert & Nadina LaSpina

Wednesday was a dark and rainy windy day here in the Big Apple. We were invited to be part of a taping for the Dr. Oz Show on the topic of assisted suicide. Our car service pick up was scheduled for 7:15 AM. We couldn't find the van which was parked far from our door and got soaked but we got to the accessible entrance to 30 Rock before 8:00.

Julie Maury, Bill Peace, Hope Derogatis and Ari Ne'eman, all people with disabilities and disability rights advocates, were already there. We had each been interviewed by producers prior to being invited to appear on the show. We were directed to a large elevator to the sixth floor where we all showed our IDs and were given our tickets. We were received very cordially, with big bright smiles, by the production staff who all looked like high school cheerleaders. “Are you excited to be on the show?” one of them asked. “As much as I am when I go to the dentist,” Nadina answered.

Though we had never seen the Dr. Oz show, we expected it to be low quality, shallow and (especially having read Steve's blog) extremely biased. But we had no idea of how great the bias and how blatant the hostility that awaited us in Oz's studio would be.

We were brought back to the elevator and then escorted into a small “holding room." With some difficulty, we all squeezed in. Dr. Byock, a palliative care doctor who opposes assisted suicide, stopped in to introduce himself and we all pleasantly shook hands. He was scheduled to be on the small expert panel, and we were scheduled to be in the pro-or-con segment of the audience.

We talked among ourselves, deciding who would make which point. Very naively, we thought we would all get a chance to speak. Then a young man, accompanied by someone with a video camera, entered and introduced himself as Greg. He said he was a producer and asked us to articulate our opposition to physician assisted suicide. Each of us had something to say and he listened and asked questions. He explained that in the first segment of the show, Dr.Oz would bring out his special guest, Montel Williams, who would explain why he is in favor of assisted suicide, then Dr. Ablow would argue against, and then a woman with ALS would be brought out. Greg asked that we not interrupt or heckle, and that we would get a chance to speak after the woman with ALS.

Montel gave a dramatic performance, grabbing his legs from time to time while he spoke, his face contorted in pain. He said he wants to have a way out when the pain gets unbearable and he wants to die with dignity. Dr. Ablow gave some good arguments, saying "I would never legally allow physicians to decide who should live and who should die... physician assisted suicide is a slippery slope..." But right from the start it was very obvious that Dr. Oz and most of his audience were not interested in hearing any arguments against.

Then Dr. Oz introduced Dana, an African American woman in her late 40s or early 50s with ALS. Her attendant rolled her to a spot right in front of the panel. She sat in a manual chair, somewhat reclined, wearing a ventilator mask. A video played on the big screens, showing Dana before tragedy hit, healthy, strong, athletic... (very exploitative). Then the ventilator mask came off (the ventilator alarmed briefly) and Dana began to speak. She said she had been living with the progression of ALS for 8 years and she was tired. She hated having to depend on others for her care and she couldn't take it anymore. She said she was depressed, lonely, had no friends left and she wanted to die. Nadina and I looked at each other and said “that's why she wants to die.” Nadina quickly jotted a note in preparation for her comments.

As Dana spoke, the sighs and the sniffles from the audience kept getting louder. The cheerleaders went around with boxes of tissues, the bright smiles on their young faces now replaced by mournful expressions.

Dr. Oz asked Dana's son how it felt to live with his mom. He said it was sad and that, though he didn't really want her to die, he also didn't want her to suffer anymore. Dana's daughter said: "It's heart-breaking, unbearable to watch her suffer. She's had enough." Dana's sister, who has her health care proxy, reiterated: "She can't take it anymore. She's suffered enough." It was obvious to us (but I guess to no one else) that the family had “had enough.”

Greg had promised that after the break, we would have a chance to speak. After we heard Dana, we decided that I should go first, since my physical condition is, outwardly, very similar to hers, and my need for a ventilator is actually greater than hers. So I told my story, including my MS diagnoses, the break up of my marriage, how bleak the future appeared to me then, and the resulting near-suicidal depression. I said how glad I was that no lethal prescription was available for me then. I said that meeting disabled people and becoming part of an activist community got me out of the depression. That I fell in love with Nadina 18 years ago and, in spite of my losing function and at times becoming depressed, I lead a full, rich and very happy life.

Nadina picked up here and said that losing function often is accompanied by temporary depression, and that having available a lethal prescription would be very dangerous for someone with a progressive disability. Then she started saying that assisted suicide was usually presented as a “choice for the terminally ill,” but here we were talking about people (Montel, Dana) who were not terminally ill but had disabilities. Dr. Oz didn't let her continue. He quickly walked away with the mike, while Nadina yelled “I'm not finished.”

During the break, Nadina complained to Dr. Oz that she had not been allowed to speak. "I'll come back to you," he said. But he never did.

In the next segment Dr. Oz brought on two more panel guests, Dr. Ira Byock and Barbara Coombs Lee from Compassion and Choices. Dr. Byock was very good, stating there was no need for assisted suicide given the availability of good palliative care. He pointed out to Dana that she could refuse treatment. He did so in a very gentle way. He asked her: “do you want to tell your doctors, maybe next time you're hospitalized with pneumonia, that you'd rather not have them do anything, let nature take its course?” (Maybe not his exact words, but something like that). Dana did not answer. Dr. Oz quickly stepped in. “Let her answer” Nadina yelled out, “she doesn't want to die.” But Dr. Oz had quickly changed the subject.

Montel kept repeating he wanted to maintain his dignity. A few times we yelled out “What do you mean by dignity?” and “Do you think we have no dignity?”

Barbara Coombs Lee didn't say much. She didn't need to. By the time she came on, the argument in favor of assisted suicide had been completed (if there ever was an “argument” – from the beginning it was clear which side Dr. Oz was on and that the show had been scripted). Dr. Ablow was booed a few times. Dr. Byock was booed when he said, "We're not talking about choice but about control. You want to make sure you die with your boots on and make up."

Every time a new segment started, Dr. Oz would say things like: “The question today is: do we have the right to end our own life if we're suffering?” or “if our quality of life has deteriorated?” On the big screens the question was: “Do you think you have the right to end your own life?” (just as sloppy and as the show’s online survey, conflating suicide with assisted suicide, conflating the right to refuse treatment with assisted suicide).

The final segment was supposed to be questions and comments from the audience. We were divided by an aisle into pro and con. During the break, Nadina managed to get the attention of the producer, Greg, who interviewed us before the show. “Dr. Oz didn't let me speak,” she told him. “NDYers have a unique perspective. We want to be heard.” He answered: “I'm sorry.”

Dr. Oz let a right-to-lifer speak briefly. He called me (Danny) a hero. And Montel replied: “let's not pit patient against patient.” Julie yelled out: “We're people not patients”, but without the microphone, none of us could be heard. A hospice nurse spoke against assisted suicide, mentioning how a woman's life was prolonged long enough for her to hold her grandchild in her arms. But most of the comments were from the other side of the room. Horror stories about people made to suffer, told by someone other than the person, and you couldn’t tell the real cause of the suffering.

Nadina, Julie, Bill, Hope and Ari kept raising their hands but Dr. Oz totally ignored us. One guy said: "These Not Dead Yet members are selfish. They don't care about people suffering. They don't want anyone to have choice.” We yelled out “It's the other way around.”

Dr. Oz kept ignoring us. But at one point, he was right next to Ari and Ari had his hand raised right in front of Dr. Oz's face. Dr. Oz asked him: "Are you right to life?" Ari answered: "No, I'm with the National Council on Disability.” Dr. Oz let him speak and Ari was great. He gave some statistics about Oregon, and even mentioned the Latimer case, the Canadian farmer who got a lot of support from the assisted suicide movement when he was prosecuted for murdering his 12-year-old daughter with cerebral palsy.

We tried after the show to reach out to Dana. Julie tried to catch up with her and her family, but was pushed away by Dr. Oz's production assistants. All of us NDYers were extremely frustrated and agitated. We all agreed we had been setup and just used as window dressing.

That audience was a microcosm of our society. Most every one in that audience was convinced that disability is a fate worse than death. Most of those in favor of assisted suicide thought we were selfish for wanting to live no matter what. Others, like the right-to-lifers, sitting along side us, saw us as heroic and saintly for putting up with what they imagined was great suffering and not succumbing to sinful thoughts of suicide. Sitting in that studio, we saw more clearly than ever how very important Not Dead Yet's work is and how extremely difficult.

Saturday, October 22, 2011

Bloomberg Rails Against Accessible Taxis

I have never been impressed with Mayor Bloomberg. But in the past week I have gone from unimpressed to deeply annoyed if not angry. It is clear to me that Bloomberg is desperate to keep the inaccessible taxi of tomorrow as the NYC taxi fleet. If he is successful I will be unable to hail a cab in NYC for the next 10-15 years. Bloomberg words, his anti disability rhetoric, is so far off base now it is hard to fathom. Someone needs to tell the man the ADA in this case is clear cut--transportation must be accessible to people with disabilities. The Feds made that clear but Bloomberg failed to take note Bloomberg I suspect may be trying to play good cop bad cop with David Yassky chairman of the NYC TLC. This week Yassky wrote that he does not think the TLC is violating the ADA in spite of the fact less than 2% of taxis are accessible. He did however acknowledge city officials "cannot ignore the possibility that a court order will at some point require a significant portion of the taxi fleet to convert to accessible vehicles". In stark contrast Bloomberg has waged a media campaign against accessible taxis. His words and actions are objectionable and insulting. He makes it sound as though if taxis are required to be accessible the entire NYC taxi system will collapse.

So what has Bloomberg said this week? Among the low lights:

The dispatch system will work. He expects people with a disability to call the TLC who will dispatch one of the 231 accessible cabs in the city. Bloomberg thinks 231 accessible cabs is adequate and that a dispatched cab will arrive promptly. Give me a break. This might work in the middle of the day in August when the city is empty but I would not expect a cab to arrive promptly if at all on an ordinary day. Forget trying to get a dispatched cab during rush hour, at the end of an event, or on a busy weekend.

The suspension system on the accessible cabs is inferior and dangerous. Accidents to non disabled people are inevitable and the city will be deluged with law suits. According to Bloomberg "The suspension is a lot worse and its harder to get up and pay the cab driver and get in and out and that sort of thing". When I read this I almost laughed. The issue of safety was used for decades to bar people with a disability from schools, buses, planes, trains, concerts etc. This new twist is preposterous. The ADA is clear--public transportation must be accessible

New York City is unlike any other city in the country. Bloomberg said "it just doesn't work in a city like ours, and I don't know that the U.S. Attorney General understands how people live in the city and the traffic patterns and that sort of thing". Traffic patterns? I think a grid system is pretty basic. And how I wonder is it that other cities with far more complex traffic patterns have accessible cabs and cabbies that actually stop for people with a disability. London and Dublin are two such cities.

The passenger in accessible cabs sits far away from the driver. Tips will be radically smaller because of the distance. According to Bloomberg "When the cabs are big enough for a wheelchair a lot of cabdrivers say that the passengers sit farther away and they can't establish a dialogue and they get lower tips". The distance is also a grave danger as well. Bloomberg maintains "You know, there's so much more pace between the backseat and the divider, you're going to have people getting hurt". A dialogue with a NYC cab driver? Who is Bloomberg trying to kid? As for the size, Bloomberg makes it sound as though the accessible cab is the size of a tractor trailer. Preposterous.

I saved the best comment for last. Bloomberg: "You can't take a wheelchair out into the street and try and hail a cab". What? Exactly where does Bloomberg expect the human beings sitting in a wheelchair to hail a cab? I am sure he ever seen a person navigate the streets of New York City using a wheelchair. I am in the street all the time. When I park my car mid block and walk to a muni-meter, fail at hailing a cab, go an entire block in the street because a curb cut is blocked or not present, avoiding construction etc.

I hope Bloomberg is desperate. If history is any indication, he sounds like former Mayor Koch. The closer the city came to being forced to make the buses accessible the more obnoxious Koch became. And Koch was the typical New Yorker--sharp witted, opinionated, and wrong. Koch's anti disability rhetoric was at least creative in retrospect. Bloomberg;s anti disability rhetoric lacks any creativity, substance and relies on antiquated bigotry. Bloomberg is very much out of touch with disability rights. Indeed, I doubt the man even knows what the term means. I suspect our billionaire mayor's mind set is stuck in a charity model of disability where laws like the ADA can be easily ignored. I sure hop the Feds will remind him that people like me have civil rights.

Friday, October 21, 2011

Dr. Oz on Assisted Suicide: A Train Wreck

Last week I received an email from Stephen Drake, research analyst, for Not Dead Yet. He wrote that he and Diane Coleman might be on a syndicated television program called Doctor Oz. The subject was assisted suicide, not exactly the usual afternoon television fodder. To say I was skeptical would be too generous—daytime television is not exactly known for quality programming and I had never heard of Dr. Oz. As it turns out Drake and Coleman could not appear. I decided to attend knowing some members of Not Dead Yet would be present as well. I had three concerns: first, the daytime television model is for tear jerking, maudlin depictions of any issue and this would undermine any serious discussion. Second, would the show use people with a disability as mere window dressing for the viewing audience. Third, would the show be grossly biased. My concerns were well placed. The taping of the show was in my opinion a train wreck. It was an amazingly horrible experience. All my concerns came to fruition. In fact I would go as far as say the show, its host and producers were unethical.

As part of the expert audience, prominently sitting in the center of the studio, I did not say a word. It was very clear from the opening that my views were not valued. Yes, I was indeed window dressing. The so-called expert panel was hopelessly biased in favor of assisted suicide. Any opposition to assisted suicide was token at best—the minimal required that gives the appearance of being unbiased. This role was performed, scripted perhaps, by Keith Ablow who seemed to delight in upsetting people. The audience became hostile to any semblance of opposition to assisted suicide and was vocal about it. Worse yet, they used a highly emotional, think tear jerking, style to move the audience. The message was clear: disability is a fate worse than death and that assisted suicide is the most humane thing available to us. Out of the goodness of society’s collective soul the terminally ill and all those suffering should be put out of our misery.

The taping of the show made me feel like I was in a time warp—think Jerry Lewis telethon at its worst circa 1960. I fear I witnessed a raw new world emerging that I suspect reflects middle American values. It was ugly and I was forced to envision a world in which the ADA was never passed into law, disability rights did not exist, the medical model of disability was the only model, and equality was given out in small doses to appease pesky crippled people and make the almighty normal bipedal humans feel better about themselves. This ties directly into the push for assisted suicide laws and the serious threat such laws are to those with a disability and other marginalized people whose life is not valued.

I know daytime television programming is about entertainment. A sober and detailed discussion was not what I expected. But I had no clue just how bad the show’s taping would be. If possible it set an all time low. It far exceeded the very worst I could have possibly imagined. In this regard, Stephen Drake’s post, “Media Alert—Looks Like Dr. Oz is Planning Slanted Show on Assisted Suicide”, at the Not Dead Yet blog was prophetic. Most of the expert panelists were in favor of assisted suicide. Little time was devoted to rational reasons why such laws are in fact dangerous. Montel Wiliams, vigorously for assisted suicide legislation, exemplified the dichotomy between those for and against assisted suicide laws. Advocates for assisted suicide used highly emotional arguments that were very effective and touched the hearts and minds of those in the audience. Do we have the right to die was Dr. Oz’s refrain. The precious little time allotted to those opposed to assisted suicide were used as the veritable straw man--the downer who poured water over the parade toward assisted suicide legislation.

I have thought a great deal about what took place at the taping of the show. It is clear to me now that the show was well scripted. A very clear plan existed. The emotional argument for assisted suicide was to be pushed as hard as possible. This would whip up the audience and lip service would be paid to those opposed to assisted suicide. The audience reaction would be visceral and nasty to any nuance or balanced point of view. The goal of the show was to illicit a strong emotional response. And here is where I think the host and producers were unethical. The star of the show—a deeply depressed black woman with ALS accompanied by a home health aide, her two children, sisters and mother. This woman was used, exploited really. She was the archetype for why assisted suicide legislation should be passed into law now. She was portrayed as trapped in a body that was failing and would continue to fail. Huge photographs of her in an athletic uniform were used to juxtapose her sitting in a wheelchair, respirator dependent-a fate worse than death. How could society be so callous as to deny a release from her suffering. The host ever so sincerely asked her children would they support her mother if she wanted to use assisted suicide. Tears flowed, the audience was broken hearted and angry. Let this woman poor die. Pan the dejected audience, go to commercial, be sure to include other people with a disability in the camera frame.

The thought that I was a part of this show makes me feel like my humanity was violated. I am also deeply worried. There is a serious push to pass assisted suicide laws in the Northeast. Shows like Dr. Oz will surely be used by well funded groups like Compassion and Choices when they give presentations. The visuals and emotional power of such tear jerking stories cannot be dismissed. It is powerful stuff. It is also grossly misleading. While others will be moved to tears this is what I was thinking; how many people with ALS, in the exact same condition as the woman on the show, are content and leading rich and full lives? I would venture to guess the vast majority. I am not dismissing the serious nature of ALS—it is an inevitably fatal condition. But why is it this woman that appeared on the show is applauded for wanting to die and not adapting to her disability? She is the tragic hero while the person with ALS and all those who adapt to disability are not supported or given any respect. Social supports for people with a disability that want to live a life that includes the mundane, a job, family, access to mass transportation and a decent home are given begrudgingly. These people are difficult, a drain on the country’s financial resources. No wonder I have not felt equal since I took my last step when I was eighteen-year old.

What the audience failed to learn was the laws for assisted suicide in Washington and Oregon have taught us that people do not choose to die because they are in pain. And the show clearly led people to believe people with a disability are in pain and hence should have the right to die. I believe in the exact opposite: we all have the right to live. The reality is people choose to die because they believe they have no dignity and fear being an economic burden on their loved ones. This is not a failure of the medical establishment (we are all going to die afterall) but rather a social failure. We fail to support the vulnerable. And like it or not I am part of that vulnerable population. Many good things have come as a result of my paralysis and vulnerability. I know that dignity and quality of life are extremely subjective concepts. I also know people see me and think they would rather be dead than paralyzed. Some are even willing to share this sentiment with me. Thus I am no different from any other person with a disability. And we people with a disability desperately need to get our act together. Show like Dr. Oz are misleading and dangerous. Our voices need to heard, our existence valued.

Tuesday, October 18, 2011

NYC Taxis, the Mayor and the U.S. Attorney

Sunday October 16 the New York Daily News published an editorial that took me aback--"Mayor Bloomberg Must Make the City's Taxis 100% Wheelchair Accessible". A few days earlier the Manhattan U.S. Attorney, Preet Bharara filed court papers that the government agrees with disabled activists who have sued the Taxi and Limousine Commission. In no uncertain and in unusually blunt terms Bharara wrote the TLC cannot continue to violate the ADA. The U.S. Attorney's remarks are out of the norm and are without question the strongest criticism of the mayor and the TLC to date. At present, the city does not require taxis to be accessible. The NY Daily News noted that "there are 13,237 yellow taxis; 231 can accommodate a wheelchair. That's 1.7%, making the chance of hailing one almost impossible. That tiny proportion clashes with the ADA's requirement of equality of access and cannot be remedied by a sketchy plan for a system of telephone-dispatched wheelchair-accessible cabs. What's more, federal standards mandate that vans must be accessible when they are employed as cabs.
Bharara got to the point, stating, "a ruling by this court now that the city is obligated to ensure that all new taxicabs are wheelchair-accessible is all the more important because it will likely have a significant impact on both the city's implementation of an accessible taxicab dispatch system and its selection of the vehicle that will become the 'Taxi of Tomorrow.'"

The TLC concept of a dispatch system will not only fail miserably (which it did under a test run last summer) it is an obvious attempt to avoid complying with the ADA. Based on the U.S. Attorney's words it seems that the mayor and TLC have no choice but to accept the fact they cannot continue to break the law. The so called taxi of tomorrow must be accessible. This losing fight on the part of the city fight reminds me of the late 1970s when Mayor Koch was violently opposed to making city buses accessible. I vividly recall Koch loudly telling reporters it would be cheaper to rent a limo for every person with a disability than putting lifts on NYC buses. Koch was not only wrong but spectacularly wrong. NYC buses are not only accessible but are used by thousands of disabled people every day. I have no doubt Mayor Bloomberg is as impressively wrong as Koch was.

Bloomberg will no doubt try and fight the U.S. Attorney. His administration has been hostile to disability rights for quite some time (see my post about hurricane shelters and lack of accessible locations to vote). I am hopeful this is a fight Bloomberg and the TLC will lose. Even with a victory change will be slow to come. Hailing a cab for a person such as myself that uses a wheelchair is an exercise in futility. I tease my friends an armed bank robber being chased by the police has a better chance of haling a cab in New York City than I do. But do not take my word for it. In a letter to the editor published by New Mobility, a yuppie magazine for people with a disability, Ellen Stohl, a visitor to the city wrote: "I just returned from a trip to New York City. Cabs do not stop for people in chairs. Outside the Empire State Building, my family and I tried to hail a cab. My husband kept flagging them down, but they would pull in and then pull right back out when they saw the chair." This is an every day event for anyone in NYC that uses a wheelchair and is naive enough to try and hail a cab. But Stohl is a smart woman. She learned the NYC way to hail a cab. She wrote "I finally had to hide behind a big flower pot while my husband and a ticket salesperson waived down a cab. We got my mother-in-law and daughter into the cab before I came out of hiding so the cabbie could not leave". And that my friends is about the only way a person that uses a wheelchair in NYC can get a cabbie to stop. It is grossly wrong and the norm. If the Mayor and TLC have their way nothing will change for decades. If they lose, I hope NYC cabbies of the future may actually change--there would at least be hope someday I can hail a cab like other New Yorkers.

Sunday, October 16, 2011

Blind Stupidity: The Media Misses the Point Again

Print media many contend is dying. What will replace it is subject to debate. I for one will not miss mainstream New York newspapers or television news programs. For me, the internet has firmly replaced the need for newspapers and television news programs. Yet I still glance at the newspapers--on line of course. My guilty pleasure is the oldest local tabloid, the New York Post. I love the headlines--tawdry and wildly creative. I avoid reading any of the "news" in the NY Post. No one I know reads the Post for the news. You read the Post for gossip in fashion, politics, and sports. And since I am New York Ranger fan I read the Post because Larry Brooks is a controversial writer who covers the team. Yesterday as I was reading the sports page and on the screen I saw a picture of a very attractive woman and the headline "Blind Ambition". Despite the cute play on words I told myself do not read that article. Just don't do it. Give credit to the Post, I just could not resist. The Post is smart I am stupid. How I wish I had not read the article. It was dreadful and typical--the archetype for articles about people with a disability that miss the point by a country mile.

The main stream media loves creative titles when disability is involved. "Blind Ambition" is catchy and the picture of a very attractive woman in her 20s is hard to resist. I knew the article was going to be dreadful after reading the first sentence: "She's Wall Street's blind bombshell". Here are some of the low lights--lines that are objectionable. Let me parse these lines and reveal the underlying cultural assumption.

NY Post: "Despite being legally blind, the bullish beauty works on the equity trading floor of JP Morgan Chase".

Assumption: People who are legally blind are not expected to hold a job and certainly not a job that involves responsibility.

NY Post: "But work came with adjustments".

Assumption: Blindness is so terrible I cannot imagine how she copes and it is remarkable she is competent. She must need multiple and costly accommodations.

NY Post: "She is surrounded by three massive 24-inch computer monitors--twice the size of her colleagues screens--to track the market, has large colorful stickers affixed to her keyboard to make out letters, and uses text-to-speech software to read her emails which are fed to her through headphones".

Assumption: Wow, JP Morgan Chase is wonderful! Imagine they spent all that money on high tech equipment out of the goodness of its heart so this poor woman can work. She sure is lucky. The employer is bending over backwards for this woman.

NY Post: "It's an incredible example of fortitude to do her job the way everyone else does".

Assumption: People who are blind cannot do what sighted people can. Those blind people that can do the ordinary--work like the sighted--are remarkable people. Incompetence and lack of ability is assumed to go and in hand with blindness.

I do not think I am being too harsh. I accept this is a tabloid and my expectations are severely limited. With editing this article, even with its catchy title, had potential. The NY Post could have made people think. For example, a good article could have noted the following.

The woman in question is lucky to have been employed before she lost her sight in 2009. The unemployment rate among blind people is 70% This familiarity surely enhanced the chances she could return to work. The accommodations made by JP Morgan Chase are required by the ADA--it is the law. The large screens and software used were not costly. In fact, accommodating an employee with a disability is not costly--usually a few hundred dollars at most.

The above facts never seem to wind up in print. The focus is always on the kindness or generosity of the employer who bends over backwards for a person with a disability. This person is always "remarkable" and possesses "fortitude". The unspoken corollary is this person puts all those other incompetent lazy crippled people to shame. If most people with disability were like this person they too would have a job. This lets society and its failure to accommodate people with disabilities off the hook. Maybe the unemployment rate would not be nearly 70% if mass transportation and affordable housing were accessible. No, this is never brought up. Instead, we laud the plucky individual cripples that succeed against all odds. This makes me crazy and I am perplexed any human thinks this way. The problem people with a disability have is a long held ingrained social bias that is demonstrated in the form of a lack of access in all avenues of life. Instead of praise one sole blind person why not pose the following questions:

Why is text to speech software not included as part of every computer operating system?
Why is closed captioning not universal on line and in all video produced?
Why is every mass transportation system not accessible?
Why is not all new home construction accessible?

I can pose hundreds of other questions about the gross lack of equal access for people with disabilities in American society. I am not sure what good it would do. For reasons I have never been unable to understand, when it comes to disability American society has yet to enter into a national dialogue about its meaning, importance, and exactly why inclusion has proved elusive. Articles such as the one discussed in the NY Post are but a small sign equality for people with a disability is a long way off.

Friday, October 14, 2011

Come On, How Bad is it?

When the issue of disability rights comes up I am often asked, "Come on, how bad it it?" Some people have a hazy idea there was a law passed a long time ago that they are convinced solved all the problems of disability based discrimination. Others are simply oblivious. Disability discrimination in their estimation is a myth. The reasoning here is two fold: first, no one would or ever has discriminated against crippled people. Society looks after the less fortunate. Second, since discrimination has never taken place there is no need to protect the civil rights of people with a disability. Any connection between disability rights and civil rights is accordingly wrong and way off base. It is hard for me to fathom the way the general public thinks. But then I think of course, people are not exposed to disability until the end of life if they live long enough. Disability is not taught in secondary schools nor is it part of university curriculums. Hence, ignorance abounds.

So to return to the question, "Come on, just how bad is it?" Pretty damn bad. Horrifying in fact. A series of grim statistics have been released that indicate things are very bad. First I read a report in the American Journal of Preventative Medicine, "Sexual Victimization Against Men with Disabilities" that not only are women with disabilities at great risk of sexual abuse but so too are men. This report found that men with cognitive disabilities were four times more likely to experience abuse than men without cognitive deficits. I tend to think the risk might be even greater because the study was specifically about cognitively disabled men who were not institutionalized. The researchers glumly concluded "Men with disabilities are at a heightened risk for lifetime and current sexual violence victimization. The most notable finding is that the prevalence of lifetime sexual violence, completed rape and attempted rape against men with disabilities was comparable to that against women without disabilities".

In keeping with the sexual violence and victimization, this week the Department of Justice released a report entitled "Crimes Against Persons with Disabilities, 200802010-Statistical Tables". And yes you guessed it things are pretty bad. In 2010, 567,000 people with a disability aged 12 and older were the victims of nonfatal crimes. No statistics were included about fatal crime victims. Again, these figures do not include people with disabilities in institutions. Nonfatal cries are rape, sexual assault, robbery, aggravated assault and simple assault. Amazing this represents progress. In 2009, 753,000 people with disabilities were the victim of a nonfatal crime.

Again, I return to the question, "Come on, how bad is it?" Bad, very bad. And it gets worse. The violence experienced by Americans is minimal when compared to people with disabilities living in Third World countries. The odds of a person with a disability in a Third World country living to the age of 21 is about 20% Am I lucky to live in America? I suppose so but I certainly do not feel safe after reading the two reports discussed. I have never felt equal. I fear crowds. I am exceedingly aware of my surroundings. I secure my wallet carefully. I do not attend any event that could remotely turn violent. This excludes me from protesting, something I would very much like to do. I would not consider going to a football game here or abroad. I know in the event of a natural disaster shelters are most likely not accessible. Forget mass transportation. In the event of a plane crash my dim odds of survival are worse than every person that walked onto the plane. Need I go on? Equal I am not. In short, yes things are bad. But this does not bother me nearly as much as the fact no one seems to care. Not my neighbors, certainly not the local school board. The town government maybe? Not a chance. The only people who care are those whose life has been touched in a tangible way by disability. Some of my friends and family care. Some of my former students care. I know the people that read this blog care very much. I just wish I could reach the average person on Main Street as politicians like to invoke. Those people matter. Those people are the one that pose the question "come on, how bad is it"

Wednesday, October 12, 2011

Keep Quiet: A Clear Message

Certain social environments are hostile to people with a disability. There is no universal source of agreement on this. Much depends upon one's age, disability, gender, sexual orientation, social status, geographic location etc. For me, your average paralyzed, middle aged white male I do my best to avoid Catholic Churches, health food stores, and gyms to mention but three places that are hostile to inclusion. I know if I venture into anyone of these places I am going to be demeaned, insulted and treated as a second class citizen. My attitude is why bother? Cut my loses and read the Bible, order vitamins on line, and work out at home. I would also put one more social setting on the list as hostile to disabilities--and this is by no means universal--but would include university campuses. Given this, I was not surprised to read about a student at a New Jersey community college who was subjected to gross bigotry. The student in question stuttered. His teacher, an adjunct, suggested he not take up important class time and ask a question but rather submit questions in writing. The teacher also refused to call on this student in class. Much moral outrage has been expressed and the story has spread well beyond the confines of the New York City area. As usual when it comes to disability, the mainstream press has failed to grasp the larger importance of this incident. Instead news stories are stuck in the lurid details: how bad is the stutter? Adjuncts are under paid and incompetent! Is stuttering a disability? Is the teacher request for written questions a reasonable accommodation? All this misses the point--badly. What is at issue is a larger and growing animosity to students with disabilities on university campuses.

Are some American universities truly inclusive and responsive to disability rights? Yes, and I can think of many with a long history of inclusion. But the opposite is true as well. Some universities are hostile to people with disabilities. For instance, Ivy League institutions I would consider among the worst. When I graduated from Columbia in 1992 a mere two years after the ADA was passed into law I was pissed. Academic administrators purposely made my life miserable at Columbia. Access was not a priority, it was an onerous expensive burden. Cost cutting was common and elevators and wheelchair lifts rarely worked--more than once I was told service contracts for repair were too costly. Entrances that were accessible were often locked, keys mysteriously disappeared. These problems are minor when one considers the social hostility. More than once I was questioned about my place as a graduate student. Did I not feel guilty that I was preventing another qualified student from getting a degree? You see it was assumed I could never work, publish, or be employed.

Throughout the 1990s and until the mid 2000s universities became more accommodating socially and physically. Few if any professors were hired but plenty of students with disabilities were accepted. The welcome wagon came to a screeching halt when the economy tanked and a critical mass of students were suddenly not only asking but demanding reasonable accommodations be made. More than once I have had my professorial peers confess the campus "was over run with students with disabilities demanding ridiculous accommodations like extra class time". When I replied I saw no difference between a ramp and extra time on an exam I was deemed "difficult" or told "that ramps were entirely different".

What then is the larger significance of the story about the student with a stutter? Universities may be more physically accessible but the same institutions that build ramps and install elevators without complaint are far from inclusive. We people with a disability are second class citizens. Lip service is paid to our civil rights. How dare we ask for more! And I have it easy. Physical access for wheelchair users is assumed to be required and as such it is provided--of course if such access is expensive it is the first line item cut from the budget. The real animosity is reserved for students with learning disabilities and what can be called disability studies. Inclusion is much more than ramps and extra time to take a test. Over at Planet of the Blind Kuusisto remarked:

"when higher education can't manage a simple accommodation it delivers that old name tag: “second rate”. By not solving the problem the hierarchical dynamics of ableism are a defacto position.
Doing better means achieving something more than assuring the professional and dignified delivery of accommodations for people with disabilities. It requires a vigorous affirmation of the term “nothing about us, without us” and it means demanding full equality and respect for people with disabilities from all the offices of higher education. Unfortunately, as Lennard J. Davis has remarked, there’s a lingering ableism within neo-liberal circles, one that progressive faculty and administrators don’t generally recognize. I agree with Lenny Davis that the failure of higher education to incorporate disability into a broader framework of campus diversity is a good part of the problem. When an institutilon can imagine that people with disabilities are to be accommodated by special segregated offices and that's the whole of the matter, you are simply reaffirming a victorian (small v) assumption that the cripples belong in a special place--certainly they don't belong in the agora."

This is all too true. In my career I have yet to feel welcomed and my views on disability rights respected at universities where I have worked. Access it was clear was my problem. If I ever broached the subject of disability studies being included in the core curriculum the idea was met with derision. If you want to delve into this in detail, I suggest you read Lenny Davis work. His book Bending Over Backwards is outstanding as is his most recent essay in the Chronicle of Higher Education entitled "Why Is Disability Missing From Discourse on Diversity (September 25). The skeptic reading this post may be thinking come on, you are full of yourself. I think not. When my son applied to college I learned much about the business of higher education. Diversity, we parents about send in huge tuition payments, were told the campus is diverse. Big bold colorful pictures of young men and women throwing frisbees abounded. Every ethnic group was represented. Not once did I see a photograph of my people. Never did I see a paralyzed student or professor depicted in admissions brochures. In fact, more than one campus tour was entirely not accessible. It was suggested that I remain behind while my son take a tour with dozens of other students and their parents. Call me crazy but this felt and seemed a lot like segregation. Would they have suggested black people stay behind? Not a chance. The fact I had this experience on the grounds of supposedly institutions of higher education is deeply troubling. A sure sign that universities have long way to go in understanding and respecting people with a disability. A good start might be a class on disability rights.

Friday, October 7, 2011

Stephen Kuusisto: Words to Make You Think

Over the last few years I have mentioned many disability rights oriented blogs. I have my favorites of course and among the blogs that never fails to impress me is Stephen Kuusisto's Planet of the Blind. If you have not read his blog and published work--especially his memoir Planet of the Blind--stop reading these words. Go to his blog or better yet buy one of his books. Kuusisto is way smarter than I am. His writing is head and shoulders above anything I have published or posted here. He is also funnier than I am. By funny I mean it in the rarest of ways--he can make you laugh and think at the same time. Okay, my man crush is over. You get the idea--Kuusisto is funny, smart and a gifted writer. If an academic could have a fan club I would be a charter member.

Remember the above words as I want to take Kuusisto to task. He put up a post on his blog, Essay on the Politics of English Clarity and Them Folks with Disabilities, that has me puzzled. I have read the post a dozen times in the last few days and am no nearer enlightenment. One thing, however is clear, the post has me thinking long and hard. It is also a fine piece of writing. For instance his words about what he calls the post human age, the mix of technology and the body, will blur the line between what is perceived to be normal and abnormal. Kuusisto astutely uses the example of well-known amputees Aimee Mullins and Oscar Pistorius. He writes

"that while prosthesis may become no different than the brand of automobile one drives, invisible disabilities or those that produce a public misapprehension about intellectual capacity (blindness, apparent deafness) will remain problematic in the town square. While physical difference can become fashionable, disablement as a capacity of mind is more difficult for the public nerve. In Western tradition we tend to believe in the mind as a substance rather than an essence, we cherish thought that is fast and muscular but denigrate neuroatypical thinking. We believe in “mind over matter” and imagine that those with learning disabilities or who are on the autism spectrum are simply not doing enough pushups."

Yes, the public nerve is fickle when it comes to disability. To me my wheelchair is an empowering adaptive device. For the general public, a wheelchair is the ultimate symbol of disability, infirmity, and total lack of personal autonomy. My wheelchair has no cool factor, its presence, my presence, a tragedy. In contrast, Mullins and Pistorius prostheses and the technology involved is lauded and valued. Prostheses arouse the notion of science fiction cyborgs that have captured the public imagination since the Six Million Dollar Man was one of the highest rated shows on television. We can rebuild him I think was a catch phrase. But exactly what are we rebuilding? A body that is socially acceptable. Given this, little or no value is placed on wheelchair technology. Instead we get preposterous devices such as the exoskeleton.

The above is where I stopped comprehending Kuusisto. He goes on to write that the politics of language demand precision when it comes to disability. We cannot, he maintains, afford to be fooled. He then refers to Nancy Mairs who embraced the word cripple. I like the directness of the word. I have lost use of my legs. I am indeed crippled. No fooling. Like Mairs, I want to believe I swagger. I am not meek, I am strong. Part of this strength I derive from my crippled body. And here is where Kuusisto loses me,. He concluded his post:

"Mairs writes famously, “as a cripple, I swagger” a position that’s unassailable given the economic abjection in “disability”--that Victorian term still tied to the factories of the Industrial Revolution--it was Karl Marx’s noun for those who lacked the economic utility to be useful workers. Surely “disability” does not swagger. Moreover the word carries no degree or standard of completeness. This is its signature problem for if a cripple is entire, singular, and freed from oppositional enactments with ability, a person with a disability is trapped in a triangle of etceteras--unable, etc; incapable, etc; accordingly, vaguely sub-Cartesian--sans thought, etc. Disability disorganizes conduct and places physicality outside of possibility. So the term has less to do with opposition to normal activity and a good deal to do with a prejudicial conspiracy against the mind. Just as nothing in nature is truly broken, just as evolution defies the normal, there is no proper categorical or taxonomic position that can hypostatize variance or give it a name.
As I’ve said more than once I prefer “world citizen” to disability. I prefer omnimodal essences and motive power.

I have read a lot of Marx. I have read plenty of disability theory too. I know exactly which work of Mairs Kuusisto is referring to. And yet I am perplexed. First, physicality is not beyond the ability of crippled people. I ski, kayak and have fathered a son. All this take a measure of physicality. Second, we cripples have a place in society. It is not a "taxonomic position" I enjoy, in fact it one one I rail against. Namely, we cripples are far from equal and perceived to be damaged goods. Like Kuusisto I do all I can to undermine this societal assumption. Third, the preference for "world citizen". Give me a break! People look at me as though I have two heads when I use words like cripple and ableist or ableism. If I were to use "world citizen" I would be laughed at and mocked. I can hear my friends now "I think you smoked too much dope in college man. Go hang out with your Occupy Wall Street buddies".

Here is where I think I differ with Kuusisto. I live in a gritty and at times a bigoted nasty world. I struggle as a part time academic, writer, activist and jack of all trades. Will do anything for a living sort of guy. This is not sour grapes, just the way things worked for me. Kuusisto in contrast is a big time academic and works at a top flight university. He deserves everything he has worked for as he too lives in a gritty and bigoted world. But, and you knew a but had to be coming soon, he has a place to hang his hat and be respected. Most crippled people have no such place where we are respected. Hence I am stimulated by Kuusisto's work, delighted by the way he plays with words yet found his post distressing. Where is its connection to the ordinary and gritty world and average crippled person? Not all cripples know Marxist theory and Nancy Mairs work and I consider myself lucky to be able to grasp most of what Kuusisto wrote. Sadly, most cripples are too worried about their meagre benefits being cut, losing their home. accessing mass transportation, or finding work. These people, my people, are always in my thoughts.